Too Much Information: World Autism Awareness Week30 March 2017
This week (March 27th – 2nd April 2017) is World Autism Awareness Week. Claire Johnson (Head of Quality Assurance and Regulatory Affairs– Centre for Trials Research at Cardiff University) gave a very personal presentation to Centre for Trials Research colleagues on autism based on the Too Much Information film by the National Autistic Society. The film aims to help people gain a deeper understanding of autism, focusing on the fact that for some autistic people the world can feel like a terrifying place with overwhelming sights, sounds and feelings.
Autism is part of daily life for around 700,000 people in the UK, it is a lifelong developmental disability affecting girls and boys that impacts how they see the world and interact with others. The way in which autism affects each person is very individual.
Autism as a sphere
Traditionally there has been a “high functioning/ low functioning” linear way of describing the autistic spectrum, but this way of thinking is changing, as Claire explained, autism is now being viewed as a sphere, with every individual’s skills and challenges mixed together inside it. Thinking of it this way makes sense, it means that just because an autistic person has challenges it doesn’t mean that they don’t also have strengths – the spectrum of autism is individual and variable and can move around within the sphere.
As part of the presentation we were asked to reflect on how we communicate and think about autism. Could we be more aware of the day to day difficulties faced by a person with autism? How could we change our own behaviours, routines or environments to help? How could we help the parent whose child is having a meltdown in the middle of the shop? Could we give the person with autism a little more time to process the information? Could we stop and think about the perspective of the person with autism a little more?
Autistic people and their families face very real difficulties. Claire outlined the importance of accepting these difficulties, but also equally important is that we become more able to recognise and support individuals and their families without promoting the exclusion or stigmatisation of autistic people.
The Centre for Trials Research is currently in the set up phase of the SenITA study, a pragmatic randomised controlled trial of sensory integration therapy versus usual care for sensory processing difficulties in autism spectrum disorder in children, and its impact on behavioural difficulties, adaptive skills and socialisation.
In her spare time Claire can be found volunteering for the Cardiff and Vale Branch of The National Autistic Society. If you are interested in learning more about autism or you are interested in fundraising for the NAS Cardiff and Vale Branch you can contact firstname.lastname@example.org.
The National Autistic Society Cardiff and the Vale Branch website provides useful help and resources.
Local events and other useful information/links can be found on the NAS Cardiff and the Vale Branch Facebook page.
“Autism does not define a person, but it can explain some behaviours” – Claire Johnson
The Centre for Trials Research is a UKCRC-registered clinical trials unit. It is publicly-funded to enable applied research that informs policy in health and social care in Wales and the UK, and is currently running studies across Wales, the UK and internationally. The Centre is funded through Welsh government by Health and Care Research Wales, and Cancer Research UK.